This Is MS Multiple Sclerosis Knowledge & Support Community

AndrewKFletcher wrote: The pain you are referring to could be excessive venous pressure on a nerve, hence the blue hue to the skin. This makes sense with regards to your report about the pain improving.

Thank you. That's what I was thinking, too.

I am still trying to digest all the information about CCVI and its impact on the central nervous system. There is a lot of current research on chronic venous insufficiency relating to other conditions, as well as MS. The research is helpful and seems to be moving in the right direction.

However, what concerns me is that we have to know the underlying cause of any health problem before it can be successfully treated. When the underlying cause is not addressed, we patch the problem, and then have to patch it again, and yet again -- but it is never really fixed.

Among other symptoms, I have had an MS-related, left hemiparesis for about six years, with a sense of heaviness, numbness and tingling on that side. I have been taking 4.5 mgs. of LDN (low-dose naltrexone) daily for about 4 ½ years. It is the only drug -- including over-the-counter drugs -- that I take for anything. It helps tremendously and seems to halt progression, but it does not cure MS. While I am thankful for LDN and appreciate its benefits, I still hope to be able to stop taking it someday. I want to be drug-free!

The shooting pains you have described and the renewal of communication in the central nervous system with Inclined Bed Therapy is intriguing and offers hope for permanent success. It shows how our bodies may heal if given the proper conditions, and IBT may be one of those conditions of the solution that I am looking for. We shall see how it goes in the coming months.

I realize that it would be nearly impossible for you to continue tracking the history of those with whom you worked, but I shall ask the question anyway: Do you know if any of the people with MS, who continued to keep their beds tilted, ever progressed with further debilitation due to MS?

ForeverSpring

I saw the photo of an ancient Egyptian sloped bed and thought that maybe only the wealthy had used this type of bed. After a little search, this idea was dispelled by an interesting item from National Geographic. Below is a partial quote from the article:
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http://news.nationalgeographic.com/news ... _giza.html

Ancient Beds Suggest Barracks Structures

Among this season's interesting finds are mud ramps approximately one meter wide, believed to be bed platforms. Ancient beds were often designed with the foot a bit lower than the head.

The beds were found within large "galleries," or colonnaded porches half open to the sky, which allowed sunlight to stream in and smoke to float out. Lehner believes the galleries may have served as a dormitory or barracks for temporary workers, providing sleeping quarters for as many as 2,000 people at once. Originally excavated during the 1999 to 2002 field seasons, the galleries appear to be part of a vast complex that also housed activities such as copper-working and cooking. . . .

Analysis of human remains has suggested that workers apparently had access to medical treatment. Evidence has been found of healed broken bones, amputated limbs, and even brain surgeries.

I have contacted a friend who can explain her experiences using inclined therapy for 11 years. Her name is Terri, she is a member of the forum but has not yet posted anything.

ForeverSpring wrote: I realize that it would be nearly impossible for you to continue tracking the history of those with whom you worked, but I shall ask the question anyway: Do you know if any of the people with MS, who continued to keep their beds tilted, ever progressed with further debilitation due to MS?
ForeverSpring

PS, I also researched the dead sea scrolls and found some interesting references to the flow of blood and fluids in the body being the same as the flow of sap in trees and the same as the flow in rivers and streams. In other words gravity is playing a roll in all and they knew it then, which explains the use of inclined beds.

Also heavy manual labour takes it's toll on the body. Trying to get out of a flat bed after sleeping for 4-6 hours following exhaustion and possibly not the greatest of diets one could imagine a reluctance to perform as good. Yet after a restorative inclined sleep no problem.

Several people living in Torbay who have ms and I know are using the inclined bed have been observed by my wife and I walking around town without walking aids of any kind.

But like Dr Bullen (my gp) says, whenever he recommends a sloping bed to anyone, he seldom sees them in the surgery and that this is a good thing from his point of view as fewer visits means he has more time to help others.

Like the picture of the bed, Andrew...would love to purchase one like that today!

Jeff's stenosis was/is congenital. He was born with malformed jugular veins. Although sleeping on a slant has been helpful for him, and he will continue to do so (to avoid further reflux), it would never have changed his physical venous structure.

Forever spring, where are you from? How long with MS? You should introduce yourself to the rest of us-
cheer

cheerleader wrote:Forever spring, where are you from? How long with MS?

I am in the Rocky Mountains.

The first time I ever heard anything about multiple sclerosis was in 1983, when a physician told me regarding my symptoms, “This could be early signs of MS,” and I asked him, “What’s MS?”

There were no MRIs and no other tests back then, except for the spinal fluid tap, which he felt was too invasive and carried risks not worth doing the procedure at that time. I had been having related problems for years prior to that, but that year was a strong marker year, brought on, as I mentioned earlier, by the high heat and humidity.

AndrewKFletcher wrote:I have contacted a friend who can explain her experiences using inclined therapy for 11 years. Her name is Terri, she is a member of the forum but has not yet posted anything.

Terri,

Curious minds would like to know . . . What has it been like to spend 11 years with MS on a tilted bed?

How old were you when you started? How has it helped you? Has your MS progressed at all since you began this therapy?

I am looking forward to hearing from you, and I am sure that others will find your experience interesting and encouraging, too.

ForeverSpring

I truly have had a wonderful experience sleeping inclined since February 1998 when I was diagnosed with Multiple Sclerosis. At that time I was looking for information and ran into someone with similar experiences to mine - I found someone who had some pain and other symptoms. She was recommending sleeping inclined and put me in touch with Andrew.

What he offered involved no pain or money (my kind of therapy!!) I used a couple of large books to prop on the frame of my bed (how easy!!) The very first night, the symptoms subsided. That was amazing - but my husband complained about sliding down. I thought - no problem, it worked. I removed the books and slept flat again. The pain came right back! I suggested my husband could sleep on the couch or get over it.

We have both been sleeping inclined ever since. My neurologist asks me during my annual visit how I'm doing. I've had subsequent MRI's and there is no sign that I'm progressing negatively. The doctor reminds me that MS isn't supposed to get better (but I appear to be!)

Beginning in a few days I'm going to start toward a degree in nursing. My doctor is encouraging my studies - he doesn't foresee any problems with this rather serious endeavor. The MS is not a problem for me. I try to stay in touch with my body and take it seriously if it tells me I'm tired or too hot or cold. The best thing for these "problems" is to go to bed and get some rest. It has never failed to restore me to where I was before I was ever diagnosed with this "debilitating" disease!

Feel free to contact me at tharri8896ATbex.net if you have other questions! Replace the AT for @ to talk to Terri

Terri Harrison
USA

Terri,

Curious minds would like to know . . . What has it been like to spend 11 years with MS on a tilted bed? Smile

How old were you when you started? How has it helped you? Has your MS progressed at all since you began this therapy?

I am looking forward to hearing from you, and I am sure that others will find your experience interesting and encouraging, too.

Terri Harrison
28 May at 03:35
I was 34 when I was diagnosed with MS. I was lucky enough to find about about the tilted bed right away. My husband complained about falling off the end, but I found an old headboard and we used it as a footboard and that stopped the problem.

I have experienced some occasional flare-ups, but nothing that hasn't passed completely. I occasionally "play" with the height at the head, but if something flares up, I go for a higher setting for a few months (or more) and it ALWAYS works!

"Marrital" relations are a big more challenging on an incline, but who says we can't use a different bed (the guest bed?) for that? It's not like I intend to SLEEP. Sleep is serious business to only be carried out on the inclined bed for my nightly MS therapy.

Even on vacation, I take my PVC pipe pieces to prop up the head. I have wondered what the airline screeners thought about the pipes in my suitcases!

Feel free to contact me with other questions - tharri8896ATbex.net

Terri Harrison

Letter to the Editor of Pathways from the Multiple Sclerosis Resource Centre. (MSRC) The charity that conducted the Independent Raised Bed Survey Report and the Charity that has failed to keep their word and help to conduct a study.

Dear Ms. Graham,

I have been asked to write to you to describe how I have been
successfully dealing with my Multiple Sclerosis symptoms. I communicate
regularly with those who are certain that the ABC drugs are the only way to
assure no further progression, yet I feel that they are overlooking something
completely safe and effective which has helped me greatly!

I was diagnosed over three years ago with relapse/remitting MS. This was
after some ten years of strange symptoms that went undiagnosed. My symptoms
began with numbness/tingling (pins and needles sensation) from my shoulders
down. That lasted several months. I went to a massage therapist that said
my muscles were tight and had my lie on small rubber balls along my spine to
help stretch those muscles. Whether that or simple a remission helped, I'm
not certain.
The tingling was accompanied with a strange sensation when I tilted my
chin down to my chest. I found out after the MS diagnosis that this is
L'Hermitte's sign and was nearly an assurance of MS. I wish someone had told
me that then! My family doctor has little experience with MS and didn't
refer me to the proper specialist with such strange erratic symptoms.
About five years ago I had a problem which came on suddenly as I was
driving. I experienced double vision. I immediately went to an optician to
get a pair of glasses. Yet I complained that they didn't help much when she
prescribed bi-focals at age 33! After a few weeks a changed to a pair of
single vision lenses that I wore for some time.
Other strange feelings from the on-set was a feeling that my skin was
burned. It was super-sensitive to the lightest touch. My doctor diagnosed a
muscular problem and gave my muscle relaxers. They only made me sleepy and
the problem would come and go erratically. I noticed that a chill would
bring this feeling on and taking a warm shower with gentle massage could get
it to pass more quickly. Sometimes the feeling would take weeks to pass and
I could get it down to days or hours with the warm massage.

The queerest thing that happened to hasten the MS diagnosis was when I
woke up one morning totally without central vision in my left eye. I went to
the hospital and they did a CT scan and other tests with no diagnosis. A few
weeks later I got an appointment with an ophthalmologist. After observing that
I had no pupil reaction to light with no other problems, she asked if I had
ever been diagnosed with MS. I told her I has no diagnosis and she suggested
that a neurologist would most likely agree with her that that was the correct
diagnosis. She told me I was experiencing Optic Neuritis and that it would
like pass in another three weeks. She was precisely right!
After a second episode of Optic Neuritis with the same eye and not quite
such a drastic loss of sight, I had an MRI of my brain. The radiologist who
read the results gave a certain diagnosis of MS. I followed up with a visit
to a neurologist.
I was terribly facinated with the MS diagnosis. I knew very little
about this disease and read everything I could. While I was looking for
information on the internet, I was looking for specific suggestions about
relief from a hot, burning sensation, different from anything I'd felt
before.

One link took me to a page when Betty Iams was suggesting a possible hint
for MS sufferers. She suggested that she had this burning feeling and she
had a great deal of trouble walking. I had been noting a little trouble with
walking, but a great deal of this burning. She also indicated that the need
to get up to urinate during the night interrupted her sleep. I had a little
trouble with this too. She suggested a study that she was involved in for
people with MS who were not on any other medications. She had tremendous
results and it seemed silly not to give it a try.

Betty's suggestion was from Andrew Fletcher. Andrew has done extensive
research, which originally began when he discovered how trees raise water.

Andrew found a way to use gravity to lift water higher than was originally
thought to be possible using current physics theory!
Through extensive research, Andrew took his theory further by relating the new
laws of physics to how our human bodies function. His theory is that all of our
bodies contain mineral salts and sugars and that when we lie flat thay accumulate,
without being circulated or removed by the bladder.
These minerals may be what is "eating away" at the myelin causing
the MS symptoms. Andrew's thoughts suggest that sleeping with our body
inclined slightly, we increase the body's own circulatory system washing away
the minerals that are at fault.
My first thought was one of confusion over the scientific principals, but
that the notion of simply raising the bed seemed so simple that I had to TRY
it. I placed two plastic crates under the frame of the bed. I measured and
that was only 5 inches higher at the head than the foot, but was the best I
could do easily. The first night I tried this, I noted that the burning in
my leg was gone and I didn't get up during the night. My husband hated it
since we slid down to the foot and wasn't going to do it again. I put us
back flat and went back to the burning feeling right away. The next night I
was ready to send him to the couch! I was going back to inclined. I did add
a footboard to ease the sliding down problem.
For three years I have been sleeping in this position. I have had no
further major symptoms with MS. I do have an occasional problem usually
aggravated by stress or lack of enough sleep time. I had an occasion to
sleep flat in a hotel for one night and I had an episode of Optic Neuritis
that passed the very next night I was back to my own bed! The bed has helped
my husband with his gastric reflux and we both snore much less! Neither of
us would go back to sleeping flat. I have modified the plastic crate method
of raising the bed. We now are using plastic PVC pipe that the legs of the
bed simple fit into and the frame rests on top as if we'd simply extended the
legs. The head of the bed is 6 inches (15 cm) higher than the foot of the
bed.
The only medication that I take is .5 mg of Xanax to assure a solid
night's sleep and cholesterol medication, 20 mg of Zocor. Sleeping inclined
was certainly helpful for me. I recently had another MRI. "There are no
enhancing lesions to suggest acutely active plaques and no other
contrast-enhancing lesions are depicted on the MRI". This is in stark
contrast to the MRI three years ago! My only lingering symptom is some loss
of feeling in my left hand. Increased use and exercise seems to improve its
condition slowly.


Hi Andrew,

I just received the most incredible e-mail from a lady about her raised-bed experience. Enjoy.

Betty


Betty

I was diagnosed with our favorite little disease (MS) about 3 years ago. At
the time I began to read everything I could about it. I happened to find
your posting to (something?) about sleeping inclined with info about
e-mailing Andrew Fletcher. I did that immediately. I had immediate success
with the bed and had set-backs when I did have to sleep flat. I've been
inclined ever since (never to go back to flat) .

I just wanted you to know that your testimony about how something so simple
could be SO useful was a God-send for me! After 3 years I just had another
MRI and there were no "white" lessions to be seen! Andrew DID say that this
may be an eventual cure for MS. I didn't have MS too severely when I got the
diagnosis and my doctor is mystified how/why I'm better? People with MS
don't get better! (yes, I'm afraid I may have)

Anyway, thank you for making your story available to people over the
internet! Without your posting, I still would be struggling along and
probably on an ABC drug of some kind (which I'm not and never was). THANK
YOU!!

Terri Harrison

Research section of of newsletter for Manchester Multiple Sclerosis Research A.R.M.S. March 4th 1998

With regard to MS. John Simkins Founder-Director of the Multiple Sclerosis Resource Centre, (MSRC), conducted interviews with 10 ms and 4 non ms patients, including 2 complete spinal cord injured people on this trial. He has produced a report titled Raised Bed Survey June 1997: 'What we found at worst is generally encouraging and in the case of certain signs ans symptoms, suggests that substantial benefits may be obtained.' We believe that there is good reason to conduct further investigation into the therapeutic value of sleeping on a bed raised by six inches at the head.'

Since meeting the people in June 97, John Simkins said in a BBC Radio Devon Interview on 27th October, 1997, "This is the first time in our 40 years experience that we have come across something which actually alters bodily systems".

Andrew,

I had my bed at about 3 inch incline for years. I raised it to 6 and have not had a decent nights sleep since. My back is hurting and I am exhausted.

I am going to have to move it back down to 3 inches. I just did not help me. This is the 2nd time I have tried the 6 inch incline. Oh well....

Cat

Hi Cat

The extra incline is adding taction to your spine during the night, initially this can become troublesome but generally clears after a few weeks or so. It may also be related to a response in the nerves, again reported by several people with ms. The first 2 weeks of Inclined Therapy can cause aching in the spine and a stiff neck, aching muscles also.

The following report might help you to understand that discomfort might be a price well worth paying.

But entirely your own choice and I do respect whicver route you choose and wish you nothing but a speedy recovery.

Andrew

Good News! I'm Finally Getting Good Results.Monday, 14-Jun-1999 13:46:10Message:205.188.195.53 writes:I've been doing the inclined bed since January. I've had M.S. for over 20 years -diagnosed in 1986 as relapsing-remitting M.S. Two years ago, I had a serious attack and ended up in the hospital for 2 weeks paralyzed from the waist down-no feeling and no motion. After a couple of months of steroids and other drugs, I became able to walk first with a walker and then with a cane very short distances.I was still left with lots of fatique, weak legs, balance problems, painful pins and needles in the legs and feet, abdominal muscle spasms, incontinance, and sleepless nights. My diagnosis became secondary progressive M.S.I decided to get off all drugs(much to my neurolist's dismay).I then found Betty Iams on the computer and began her regimen of strict diet, exercise, supplements, meditation, and I've added acupuncture. It feels great to be in control. This is a lifetime regimen for me. I'd been coasting along not getting better, but not getting worse when I read about the inclined bed. I decided to try it-what could I lose? Right away, the painful abdominal muscle spasms started to subside and sleep became somewhat better. Then nothing happened. Then I started getting worse. I decided to give up the inclined bed -this after 3 months. One problem, however-I can't sleep on a flat bed anymore! Andrew wrote for me to hang in there that it was expected that I get worse before I get better. Everyday I waited. Then like Andrew said, I started getting better and better. This past month has been amazing! I even walked up and down a flight of stairs with my cane unaided. Fatigue has gone, the abdominal muscle spasms have gone, t he painful pins and needles are subsiding, leg strength is getting better so that I can walk greater distances, and balance is much better. I still have incontinance and sleep problems, but given time, I know those problems will be gone, too. One very interesting thing happened with my eyes recently. I'm very nearsighted and had my prescription for my contacts checked 3 months ago. Last week, I went back to the eye doctor's complaining that I just couldn't see. He checked my eyes again and much to his amazement, he found that they had improved greatly since my check-up 3 months ago!I wrote Andrew about this happening and he feels that sleeping on an inclined bed can help the optic nerve to regenerate and repair the damage of long term M.S.Let me encourage anyone who is trying the inclined bed to stick with it and don't think it won't work. I'm proof it can. My whole family and I are so grateful to Andrew Fletcher. Liz Steinbrueck

Andrew,

Thanks for passing along Terri’s messages. She was fortunate to be able to change her sleeping position early, before much damage had been done to her central nervous system.

These two comments caught my attention:

“Even on vacation, I take my PVC pipe pieces to prop up the head. I have wondered what the airline screeners thought about the pipes in my suitcases!”

“I had an occasion to sleep flat in a hotel for one night and I had an episode of Optic Neuritis that passed the very next night I was back to my own bed!”

At the end of this month I will be staying in someone else’s home as a guest for a few nights, and will be carrying only one small bag with me. After reading again your posts regarding myelin liquid crystals and how they might be affected by the sleeping position, it is a bit unnerving (pardon the pun) to consider what may happen to me when I revert to the flat bed for those few nights!

ForeverSpring

catfreak wrote:Andrew,

I had my bed at about 3 inch incline for years. I raised it to 6 and have not had a decent nights sleep since. My back is hurting and I am exhausted.

I am going to have to move it back down to 3 inches. I just did not help me. This is the 2nd time I have tried the 6 inch incline. Oh well....

Cat

Cat,

Maybe the change from 3 to 6 inches is too great all at once? Have you considered going up gradually -- maybe 1 inch at a time, or even 1/2 inch at a time -- so your body can become accustomed little by little?

I am new at this, and have no idea what the future will bring, but there is definitely something to this inclined bed proposal.

ForeverSpring

Your welcome. Have you communicated with Terri? she would love to hear from you. She is also a friend on my facebook account

during the pilot study people were asced to revert back, many would not, but some did and it proved very interesting. No permanent problems were reported in the short term.

If you could revert back to sleeping flat it may prove one way or the other how much inclined therapy is or is not doing for you.

Your message to cat about inclining in incraments is sound advice and I should have suggested it but didn't thanks for that .

Andrew

ForeverSpring wrote:Andrew,

Thanks for passing along Terri’s messages. She was fortunate to be able to change her sleeping position early, before much damage had been done to her central nervous system.

These two comments caught my attention:

“Even on vacation, I take my PVC pipe pieces to prop up the head. I have wondered what the airline screeners thought about the pipes in my suitcases!”

“I had an occasion to sleep flat in a hotel for one night and I had an episode of Optic Neuritis that passed the very next night I was back to my own bed!”

At the end of this month I will be staying in someone else’s home as a guest for a few nights, and will be carrying only one small bag with me. After reading again your posts regarding myelin liquid crystals and how they might be affected by the sleeping position, it is a bit unnerving (pardon the pun) to consider what may happen to me when I revert to the flat bed for those few nights!

ForeverSpring

Andrew and Forever,

I moved the bed back to 3 inches and am sleeping much better. I have no way to move the bed up 1/2 inch at a time, although that would be a much better way to get used to it.

Cat